Monday, December 16, 2013

Recently, I attended two events about family-centred care. I learned a lot but came away with conflicting emotions. I was intrigued and happy yet also very concerned. The conferences confirmed a suspicion that I’ve held since I first received my children’s diagnosis: professionals tend to ignore the influence of a family’s culture, structure and finances on its ability to care for a child with disabilities.

Most of the presenters seemed to avoid talking about the “social” or “cultural” factors that I believe must be taken into account with any “medical” or “clinical” considerations of the child and family. I kept wondering how is it that the “social” considerations were being ignored when the family is a clear social construction? This was very troubling, for me.

I’m the mother of twins who are challenged with what it means to live on the autism spectrum. I’m also an immigrant from Jamaica. Over the past three years, I’ve been puzzled by the expectations of some healthcare professionals.

When my boys were younger, therapists couldn’t understand why I wasn’t overly concerned about their social development.

I told them to consider a few things in my experience:

In my Jamaican culture, children, especially young boys, develop much later than girls. In Jamaica, it’s not uncommon for boys’ speech to be somewhat delayed until they’re four- to six-years old. And since my boys were born prematurely and are twins it makes the expectation for speech different from if they were singletons born full-term. Their ear, nose and throat (ENT) specialist, their pediatrician and other moms of multiples allayed any fears I may have had: they said delayed speech is not uncommon for multiples. And, everyone reminded me that each child develops at their own pace.

Further, I expected my children to pick up speech in our single-parent family with no older siblings more slowly than they might in a house with two or more adults plus older children. In the latter, it would be quite normal for toddlers to hear and organically absorb the spoken language that takes place almost constantly.

In my culture, Jamaican mothers do not carry on incessant, “irrelevant” chatter with children who themselves can’t speak. As for mothers conducting “pretend play” sessions and arranging play dates, that was unheard of—as though working mothers didn’t have enough to do!

Playing with other children is another area where immigrant families may have different expectations from the mainstream. While in both countries it is typical for young children to play with each other, in Jamaica there’s been comparatively less emphasis on pre-school or daycare and parents certainly don’t organize play dates. So there aren’t the same opportunities for socializing among children who aren’t related.

Young children in my culture play mostly with siblings or relatives or with their toys in their own homes. Older children may play with others in the neighbourhood in their own backyards, on the street or elsewhere. But for certain, these are not arranged play dates where parents are hovering in sight and earshot.

Parents in my culture may not notice a child is developmentally delayed until after they start school. It is during the early years of primary school—when children are between six and nine years old—that a parent first learns about their child’s disability from a teacher in Jamaica.

There has been very little emphasis on “learning through play” in Jamaican primary schools. Play is an informal activity between and among children. Adults are not expected to be integrally involved in unstructured free play—in or outside of school—which is the way things were in Canada just a couple of generations ago! Today in North America the mainstream parenting style has earned us the name “helicopter” parents since we feel compelled to hover.

When my children were not making eye contact at two years old, I simply didn’t think it was important. Personally, I didn’t become aware of the cultural importance of eye contact as a means of communication until I arrived in Canada.

Until recently, I have always thought this “eye contact” was an expectation among adults, only. Among immigrants, there are different cultural expectations regarding the observance of critical milestones such as eye contact. In Canada, in some immigrant households, making eye-to-eye contact is a social “no-no” especially for children. This may imply that you are being confrontational or not showing respect to someone in authority.

Over the past two years, since my sons’ diagnosis, I have come to understand fully that milestones are monitored extremely closely in Canada and if my children don’t meet these established milestones, they will be even less advantaged. So, these days I make the effort to determine the developmental milestones they must meet.

There are so many things that are different in Jamaica and Canada, even though they both share a common colonizing history. In my opinion, not only is it common sense for health professionals to be more mindful of the cultural realities of the families they see, but they need to consider the social and economic, as well.

Consider family A, headed by the low-income, less-advantaged mother who is an immigrant; who speaks English as a second language; who parents not one child with disability, but two; and who herself has a learning disability.

Now consider family B, headed by two non-disabled parents who are middle-class, non-immigrants, working professionals supported by a nanny and grandparents.

Shouldn’t family-centred care look remarkably different for each of these families?

Simple but important things can be barriers to family A. Things like transportation to therapy appointments; not being able to afford adapted equipment or to hire a babysitter; not being able to understand a hand-out about home therapy that’s written in English using clinical words; and not being confident enough to engage or communicate fully and openly with those in authority.

Similarly, some mothers may not offer their opinions regarding the care or treatment of their children without first consulting their husbands and older females for their input or “buy-in.” For example, in some cultures decisions regarding whether or not to diagnose and subsequently “label” a child, are life-changing decisions that are not to be made on the spot by a younger “less empowered” female.

Not only does Family A not have the financial and people resources that Family B has, but many immigrant parents are afraid to speak out. In some cultures it is certainly not acceptable to appear to oppose, criticize or speak out against those in authority. Most immigrant mothers from the developing world, regardless of culture, have not been taught how to advocate nor have they been taught that it is okay to advocate. They may fear that asking for services or changes in how services are delivered will negatively impact their child’s care because the authority figures may disagree and take it out on the children, passive-aggressively or overtly!

So in my opinion, for effective implementation of family-centred care, institutions must work closely with families and they must invite parents to share the cultural, social and economic realities of their everyday life. These realities must be part of the “family-centre care” conversation. They are just as important as the child’s medical diagnosis and treatment options because without an understanding of them you can’t have cooperation and true collaboration. These realities are critical to the success of any prescribed care and treatment.

When Jacqui Getfield is not engaged with her
sons Jay and Em, she steals time away to provide corporate communications, writing and
editing services through her company, Say It Write Communications. To contact Jacqui directly, e-mail jacqui@sayitwrite.ca

7
comments:

What a beautiful family! You write so eloquently about this need--thank you. The need for family-centered care needs to be publicized more, especially to legislators and those who control the funding for the service providers.

Jacqui, your observations are spot on and I hope that other professionals reading this will take it to heart.

I have come to similar conclusions based on my own experiences migrating to Canada many years ago, having a disability and working as a health care professional with families over the years.

My disability was not caught until I was four and even then, the abundance of services that we take for granted in Canada were certainly not available. My family made the best of the limited resources they had and because they were not held to account by a comparative standard, my perceived limitations were outweighed by my positives.

I'd like to think that when we meet with families, we consider what is practical, achievable and sustainable for them in the given moment, instead of reaching for what is considered the 'gold standard' and making parents feel like failures.

I always ask my families "Is this something you think you would keep on doing?" and "How do you think this will best work for you?"

Thank you again for sharing and I wish you all the best for your two beautiful boys.

I think it is very great observations Jacqui about the system and different cultures, families and their issues...great article, I hope many professionals will read this article and pay more attention to different cultures and family dynamics. I am sure it will help us to understand better how to support different families and how to improve family- centered care and inclusion.

What a fantastic post, Jacqui! Good for you for trusting your instincts and questioning the so-called "authority". A lot of current common practices are not research-based at all. Aspects of them might be, but it often comes down to the opinion of a person that shapes the treatments they "push". I was told to have my 2-year-old son sit strapped at a desk (yes!) in order to have him focus more, which was completely against my instincts. For a time, I questioned my instincts but I know now that we need to be advocates for our children and we know them much better than the professionals who care for them. There are therapies and services that are completely unnecessary in my opinion and in time children do develop on their own time lines. What we can do to foster that is debatable and highly subjective and I'm sure culture is not taken into consideration in the development of most of these current practices! In our case, I felt strapping my son down would do more harm than good and now we follow his lead using DIR/Floortime (icdl.com). Your family is beautiful and I applaud your courage in speaking up on these crucial issues.

Jacqui, as an educator for young children, I understand your earnest concern about the indifference that is applied to culture when assessing young children’s development. My experience with young children made me aware not only of the cultural implications but also the socio-economic consequences that affect their development. Like you, Jacqui I am very disturbed about how a young child can be easily labeled as ‘developmental delayed’ because certain factors, such as culture and economics were not considered in his or her assessment. Every early childhood training tells you that each child develops at his or her own pace. However, there are certain milestones that have to be met in each stages of development. In the United States assessment begins as early as 24 months in preschools; these children are required to identify certain objects, use three or four words in a sentence, how they interact with other children, and exhibit age appropriate mobility. I found that culture plays a very important part in these assessments.I hope that some of the early childhood educators who are responsible for formulating these programs would examine what you have written and take the necessary steps to address this dilemma. Our children’s future is at stake

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.